Karen - Interview 12

Age at interview: 45

Age at diagnosis: 39

Brief Outline: Karen was 34 when she first started having symptoms down the right side of her body. She experiences a lot of freezing and festination and some dyskinesia.

Background: Married, 2 children aged 18 & 20, still working as a clerk.

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Karen was 34, married with two young children and was working part time when she started having symptoms. She was finding it harder to use the keyboard at work and her dad had noticed she wasn’t walking properly or swinging her right arm. Many tests and visits to the neurologist were inconclusive and it took a long time for her to be diagnosed. For several years, the doctors thought she might have MS. After a car accident in 2000, she started having a tremor down her right side and she saw a neurologist who gave her some medication. Karen wasn’t told what the drug was for and she found out by looking it up on the Internet that she had Parkinson’s disease. 

 

She felt very frightened but she got in contact with the local Parkinson’s disease society and talking to other people with Parkinson’s disease who knew exactly what she was going through has helped her enormously. She is now the Young Onset representative of her local branch and has helped to develop this part of the branch in to a thriving group.

 

Karen found it very difficult to believe that she had Parkinson’s disease at first and she felt very depressed for a while. But the support of her GP and the Parkinson’s Disease specialist nurse helped her to cope. She doesn’t think she will ever accept the disease but tries to live her life as best as she can and to be positive. Although she says it would be very easy to stay at home, she pushes herself to do what she can, as best as she can. Achieving things, even if they are small, makes her feel better. She thinks it is important to not let the disease take over your life, to rest and do what you can when you can. Talking to others who have Parkinson’s is very important in helping her to cope.

 

She experiences freezing and festination. At first, she lost confidence going out shopping on her own but now she feels confident if she times her medication correctly and doesn’t do too much. She keeps a walking stick in her bag which helps her to carry on walking. Physiotherapy helped at first to learn the techniques of how to manage freezing.

 

Simple movements like putting a key in the door, chopping vegetables and walking all need a lot of thought and can be very tiring. She goes to Tai Chi once a week which helps her to concentrate her mind and to relax. Her employer has been very supportive in finding different jobs for her to do as her symptoms have progressed.

 

When Karen and her husband told their children about her illness, they were honest and positive and said that although it would affect their future, they would learn to live with it. She doesn’t let Parkinson’s disease take over family life and they use humour to cope. Her illness has brought her and husband even closer together. He found it very frustrating at first because there was nothing he could do to help and at first he wanted to do as much for her as possible. They now have an agreement that she will ask for help if she needs it.

 

Karen says she does get frightened, upset and angry at times, particularly when she thinks about the future. She manages her fears by telling herself that worrying about the future before it happens just stops her from doing the things she wants to do now.

When Karen first joined PDS she thought she was the only person around with early onset PD. PDS helped her to set up a group which now has 40 members.

I wasn’t old enough to have Parkinson’s Disease I thought. I wasn’t forty yet and I was really worried about what would happen in the future. I didn’t know where to turn. Luckily a Parkinson’s Disease nurse specialist put me in touch with the local branch of the Parkinson’s Disease Society and it was through them that I met lots of people who’ve been able to help and support me. I’ve now become very involved with the Parkinson’s Disease Society and I am the young onset representative for the [local] branch.

 

In the beginning I found it very difficult to find out much about young onset Parkinson’s Disease. There wasn’t really many people to turn to. I went along to the [local] branch but again it was nearly all old people, or so I thought. After going for a few months I found that in actual fact they weren’t all old and disabled, there were some younger people there. And that’s when the support group started to develop and really we help each other. We give each other advice, things that’ve happened to us in the past. To help to cope with the different things that happen. And really it’s a case of looking on the internet and finding out as much as you can. The PDS website is very good, and they also produced a DVD more recently, especially for young people and newly diagnosed people, which is a great help. I only wished that had been around when I’d been first diagnosed. 

Karen gets support from being able to get together with other young people with Parkinson's disease.

We get together with other young people that have Parkinson’s Disease, just to talk and share experiences and just to be a support for each other. The biggest thing is that no matter how supportive your friends and family are, they never fully understand. And people with Parkinson’s know exactly what you’re going through and can always give help and support. And we help and support the carers too because they also need help.

 
It started with just three of us about two and a half years ago, and three of us went out to the pub for a chat and, you know, sort of talk about how we all were coping. And it’s just grown and grown and grown over the last couple of years and there’s now forty. And I’m actually the young onset representative and we organise social events, nothing formal. We just go out and have a good time and talk. As I said, talking is very, very important and the carers and partners and family and friends they can come along as well because they need support as well, especially your partner. It’s nice for them to talk to somebody as well and, you know, just find out how other people are coping. Yes, so it’s very beneficial.

Karen looked for information about the pills she had been given on the internet.

I didn’t know what was wrong with me so I went to see a GP. He thought it was repetitive strain injury which I didn’t believe so I went back for a second opinion. He then sent me to a neurologist to do many tests. After all these tests they could tell me what I didn’t have but they were unable to confirm a diagnosis and so was basically told to go away and get on with your life and see what happens over the next few years.

 

In the year 2000 I had a car accident and this had appeared to start a tremor. Over the following year, every time I was under any stress or anxiety I’d start a tremor down my right side. I couldn’t understand what was happening so I went back to my GP who referred me again to a consultant. Again I had a load more tests, again nothing was conclusive. They gave me a tablet to try. I came away and he didn’t tell me what it was actually for so straightaway I looked it up on the internet, then the word Parkinson’s jumped out at me. I didn’t really know anything about Parkinson’s all I knew was of people that were old and sat in the corner of, of a room with a nodding head. I was very frightened, very anxious, very concerned for the future, I didn’t really know where to turn. I didn’t know where to find any extra help.

Karen worried about going out alone till she learnt to adjust the timing of her medication to suit her needs.

I was lucky that although I’ve actually had the disease for ten years it hasn’t until recently really affected what we’ve been able to do. I find that we did a lot of walking and we’ve not been able to walk as far or I’ve become more tired. I did lose a lot of confidence with going out with friends and worried that I wouldn’t be able to walk so far, so tended to decide not to do it. I lost a lot of confidence going out shopping on my own and would always make sure I was with somebody. But I’m beginning to sort of learn that I can do it and I just have to make sure I time it right with my tablets and not do too much really.

Karen only realised that she probably had Parkinson's disease when she looked up her medication on the internet.

In the beginning I’d had a lot of tests and they couldn’t actually confirm the diagnosis. And at one stage the neurologist said to me, “it could possibly be MS. You could be in a wheelchair in two years or running a marathon in twenty. I can’t tell you what’s going to happen” which was not very nice, very upsetting. And then of course four years later when my symptoms progressed I was then told that again they weren’t, that it wasn’t a conclusive thing, “but take this medication away with you and try it.” And so I found out I had Parkinson’s by looking on the internet and, it wasn’t a nice way to find out that you had a disease. 

 

And I really, then I went back to my GP and asked for a second opinion because I wasn’t convinced that they’d got it right the second time and for a good year or so I kept thinking, ‘No, I haven’t got Parkinson’s. They’re going to tell me I’ve got something else.’ And so it was a long time before I was able to start taking on board the fact that I did have Parkinson’s disease and how it was going to affect my life. And start to accept the fact that I had to live a life with a disease and taking medication for the rest of my life. And that’s I suppose really when I started to become very depressed.

Karen describes various problems with movement which occur on 'bad days'.

What does a bad day involve?

 

A bad day is when I struggle to get out of bed on a morning, my tablets don’t kick in properly, so I have a lot of freezing and festination, this is where I basically it’s like your feet stick to the floor and you can’t lift them. You’re in risk of falling over because your body wants to move forward but your feet don’t want to come with you. Festination is when you just literally stop and cannot move and then you do very little sort of running steps on the spot which are totally out of control and that’s when you often lose your balance and fall over. I then hopefully have a period of time where my tablets are working quite well and then I tend to rush round doing things I want to do which is probably not always a good thing, and then I start to get what they call dyskinesia, and that is severe involuntary movements which are quite painful because they’re muscle spasms and also they really do tire you out. And also of course it’s very visual so you become very conscious of it when you’re out with other people and the more you try to stop it because you’re conscious, the worse it gets. And then the cycle starts all over again, the tablet starts to wear off, I then start to struggle with movements, all my movements are very slow. I have to think twice as hard to do anything that I do. Movements that would just come naturally to most people, just simple things like writing, putting a key in the door, chopping vegetables, people just do it, oh and walking, people just do it they don’t have to think about it. But I have to think about what I’m doing which is quite a tiring thing and it’s like that most of the time.

Karen accepts that depression goes with the disease but feels that the only way to come to terms with it is to accept it for what it is.

Unfortunately with Parkinson’s, depression is also a very common side effect of the actual disease and I am on antidepressants and have been for a while to help me cope with, not only the disease but just the general living with the disease.

 

Yes I think you go into a state of denial when you’re first diagnosed and you’re adamant that you haven’t got the disease, especially myself because for the first four years they actually thought I might have had MS. Nothing was conclusive enough to point to Parkinson’s and everything was ruled out but there was a possibility of MS. After four years the symptoms progressed and that was when they were able to say it was probably Parkinson’s. And it was then really that I felt very confused. Didn’t really believe the diagnosis because I’d already sort of gone through the stage of trying to accept one diagnosis although it wasn’t confirmed, and I think that’s when I started to go into denial that I didn’t have the disease. And that’s when you start to, just sort of curl up into a bit of a ball and, and not want to face the world. But at the end of the day the disease isn’t going to go away. You’ve got the disease. You have to learn to deal with it. 

 

I don’t think you ever accept the diagnosis but you learn to live with it, and you learn to live your life as best you can. I think it’s very, very important to talk to lots of people, do what you can when you can, and if you can’t, well do it another day. You know, rest when you need to but don’t put off doing things you want to do because there’s always a way round something.

Karen has learnt that worrying about the future can stop you getting on and doing what you can now do.

Yes I think, I think you start with denial and I think you, as I’ve said you don’t ever actually accept you’ve got the disease, but fear and anxiety of the future is very much something that goes on in your mind.  Every morning you tend to wake up with the thoughts of, you know, ‘what if this happens’ and ‘when might this might happen?’ But you can’t worry about that, you’ve got to just let the disease take its course. We all know that the disease is going to progress. We all know that I will become worse. We all know that gradually I won’t be able to do the things that I can do now.

 

But worrying about what’s going to happen in the future before it happens, just stops you doing the things you want to do. And I do get frightened, I can’t deny it.  I do get very upset.  I do get very angry, why me?  But at the end of the day nobody’s going to take this disease away from me. I can either curl up in a ball and have no life, or I can get out there and just get on with it and enjoy the life as best I can, which is what I’m determined to do for the sake of myself but also for the family and friends that are around me.

Karen warns the travel agents in case she needs some help during the journey.

Holidays to me are a great release. I’ve always been determined to enjoy holidays right from the time I was first diagnosed, in fact when I was first diagnosed the first thing I did was went along to the travel agents and booked a holiday to Disneyworld because I was determined to go. And I think you, you know, everybody can go on holiday. You might have to think about things in a more round about way.

 

When you go through the airports it’s always a good idea when you’re booking your tickets through the airports just to advise them that you have a disability. And we have found, from our experience that they’re very, very helpful. And, you know, they can help you get through the airport without too much hassle. And so it’s always worth being, like I said before, be honest and, you know, letting people know that you do have a disability. And something like Parkinson’s it’s strange because you can look at me at one time and I just look perfectly normal and I’m moving perfectly okay and people must think ‘well there’s nothing wrong with her’ and then an hour later and my medication has worn off and I can hardly put one foot in front of the other. And it’s very difficult to explain to people. You feel like you need a badge, you know, telling people what’s wrong and why you’re like that. But, you know, you do have moments when you cannot move properly and you need to let people know that that can happen, and they can help you, but I’m a great believer in holidays.

Karen has learnt to accept the things she can't do and ways round some of her difficulties.

Yeah I think it’s, it’s very easy to hide yourself away and think I can’t do this, I can’t do that, I can’t do the other. But at the end of the day it’s only you stopping yourself from doing it. If you’re determined enough, you might have to find ways around doing things. I have a walking stick that I keep in my bag and when I freeze I get the stick out and it gives me the confidence to try and move on and carry on doing what I’m doing. I’m very stubborn and I’m very determined that the disease is not going to beat me, but I’ve also learnt that there are some things that I just cannot do on my own. But I, it’s just very important to just try and do what you can and like I said, don’t let the disease live your life. You live your life with the disease and don’t let it take over your life. You do what you want to do as best you can. I think that’s very important, stay positive, that’s a very important thing, talk to people, stay positive and do whatever you can when you can. I think that’s really important.